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Designing a culturally appropriate
self-management intervention for
primary breast cancer patients from
different ethnic groups using
‘Experience Based Co-Design’ (EBCD)
Dr Julie Wray, Chair, Service User Research
Partnership (SURP)
Diana Jupp, Director of Services
Acknowledgments
Chief Investigator:
Karen Scanlon - Head of Research & Evaluation, Breast Cancer Care
Co-authors:
Drs Charlotte Tompkins and Judith Offman - researchers, Breast Cancer Care
Catherine Dale - Programme Manager Patient Centred Care, Guys & St Thomas’s NHS Trust
Dr Jo Armes - King’s College London
Chrissie Hepworth and Dr Julie Wray Service User Research Partnership, Breast Cancer
Care
Professors Emma Ream and Seeromanie Harding - King’s College London
London and South Services team, Breast Cancer Care
Research participants
Staff and stakeholders
The Big Lottery Fund for funding this project
UK wide support and information
Moving Forward Courses
Improving the wellbeing of breast cancer survivors (4 yrs)
Aim: to examine the needs of breast cancer survivors from
diverse ethnic and socio-economic backgrounds and develop
and test an intervention to address these needs.
Overall research aims
• To understand the needs (phase 1)
• To understand the barriers and type of
intervention needed (phase 2)
• To design, develop and evaluate an
intervention to address these needs and
overcome barriers (phase 3)
The research so far…
Phase One
• 66 qualitative interviews with women across England
from different minority ethnic and socio- economic
groups
• Findings:
–
–
–
–
Lack of knowledge and awareness about breast cancer,
stigma and fear of cancer
Social isolation
unmet emotional needs after treatment
Phase 1 Outcome:
Uncertainty about type of support intervention required
• Which ‘need’ to target?
• Participants raised many different ideas about type of
intervention(s) required
• Systematic Review - Q. Can we culturally adapt an
intervention that already exists?
• We needed patients and experts to help co-design
our intervention
Phase 2: Experience based
co-design (EBCD) method
A staged participatory research approach which seeks to
capture and understand how people experience a service
to improve future experiences. We used an accelerated
approach
Gather
experiences
from patients
and staff
through
interviews,
observation
and group
discussions
Identify key
'touch points'
(emotionally
significant
points)
Create a short
edited film is
from the
patient
interviews
Show film to
staff/
stakeholders
and patients,
conveying
patient
experiences
Bring staff /
stakeholders
and patients
together to
work in groups
to identify and
design
activities to
improve the
service/
experience
“Patient
Events”
Separate films for Black
and South Asian
groups were made to
highlight their unique
experiences
Break out discussion groups facilitated by a
member of Breast Cancer Care staff
Joint staff and
patient events held
at library in
Peckham
Prowess is
launched!
Patient
Promoting
RecOvery
Wellbeing
Equality and
Support in breast cancer
Survivors
Our experience of EBCD method
• Engagement & participation which produces
collective co-design and ‘mobilised’ group
• Can engage ‘hard to reach’/ ‘seldom heard’
• Meaningful contribution and people feel valued
• Films - get people talking!
• Provided the opportunity to meet/ influence people
may not have had opportunity to meet before
Our learnings:
• Provide tailored information: finance and
employment rights and benefits and on skin and hair
care for black and Asian women
• Use interactive & visual delivery methods: less
emphasis on traditional teaching
• Promote social interaction with others: to help
nurture and build peer support with others
• Use expert & lay facilitators: representing different
ethnic communities and volunteer role models
• Involve family: to inform them and to address their
information and support needs
• Be inclusive rather then exclusive
Next steps:
• PROWESS Feasibility trial (2014- 15) with
embedded process evaluation
• Expected outcomes
– Adapt our current services model
– Work with partners in delivering the model or
– Share our learnings and train others to deliver
the PROWESS intervention
Thank you!
[email protected]
[email protected]
www.breastcancercare.org.uk